Patients warned of possible exposure to fatal brain disease

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Dr. Joseph Pepe, president of Catholic Medical Center talks Thursday Sept. 4, 2013 in Manchester, N.H., about a patient who had brain surgery at the hospital and later died of a rare, degenerative brain disease. (AP Photo/Jim Cole)

MANCHESTER, N.H. (AP) - Eight patients who may have been exposed to a fatal brain disease at a New Hampshire hospital have been contacted by the hospital's president, who said Thursday the patients aren't panicking.

Dr. Joseph Pepe called the Catholic Medical Center patients a day after health officials announced that they may have been exposed to Creutzfeldt-Jakob Disease - a brain disease characterized by rapidly progressive dementia which can cause death within months after symptoms first appearing. It has no treatment or cure.

Officials believe the extremely rare disease caused the August death of a patient who had brain surgery at the hospital in May, and they say there's a remote chance it was transmitted to other brain surgery patients because the abnormal proteins that cause the disease can survive standard sterilization practices.

The patient's cause of death won't be certain until an autopsy is complete but officials believe it was caused by Creutzfeldt-Jakob Disease.

In addition to the eight Catholic Medical Center patients, up to five more in other states also may have been exposed because some of the surgical instruments were rented and passed on to other hospitals.

About 200 cases of Creutzfeldt-Jakob disease are recorded annually in the United States, according to the National Institutes of Health, with the vast majority occurring spontaneously. In fewer than 1 percent of cases, the disease is transmitted by exposure to brain or nervous system tissue, and there have been only four reported cases of transmission via surgical instruments. None of those were in the United States, and the most recent case was in 1976, Pepe said.

Some hospitals might opt not to tell patients because of the low risk involved and the anxiety it could create for them, Pepe said, but it was important to keep them informed.

"We felt the risk of that anxiety did not outweigh the ethical principle of letting them know and also preventing them from possibly contaminating or exposing others should they have another brain operation," Pepe said.

The only definitive way to diagnose the disease is through a brain biopsy or autopsy. There are no screening tests, and tests that would point toward a diagnosis of the disease are only effective once symptoms such as memory loss and impaired coordination appear, Pepe said.

But he said the patients he spoke to are responding to their predicament calmly. One expressed more concern the hospital or its surgeons would be harmed by the publicity over the incident, Pepe said.

"They are all fine at this point, but I let them know that they can not only call my chief medical officer and the patient advocate ... but also myself, and we will stay with them as long as they need us," he said, adding that he apologized for causing them any anxiety.

The hospital will arrange counseling sessions if any of the patients request them, he said.

"Some may get angry later on, they may have anxiety, and then there are others who do not think anything of it," he said. "One person said, 'You know, I have really many other things more concerning than this.'"